My story of being a hypochondriac, an MS patient, and a guinea pig.
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Sunday, July 22, 2012

MS and this Sizzling Heat

I had such grand plans this spring. I was looking forward to summer and days at the beach or hanging out at my friend's house and dipping my feet in her pond. Instead I hibernate.

I live indoors, only looking out at the brilliant blue sky with the burning golden orb from the safety of my air conditioned cave.

My skin is pale and I haven't even driven by the beach, let alone set foot on it. And I'm only 30 minutes from the gorgeous shores of St. Augustine, Florida.

And don't even get me started about the 3a.m. hot flashes I've been having. Seriously?? I'm doing the best I can to escape the heat but apparently I am capable of a nuclear meltdown from within. No need for the great outdoors.

All this heat is uncomfortable for anyone, but for a person with MS, let me tell you, it hits us like the house falling on the wicked witch. Look around you next time you are outside. Do you see anyone melting into a puddle? Anyone trying to walk with legs that were cooked way past al dente? They may just have MS.

You don't normally go around thinking of yourself as having an electric cord for a spine, but really, that's what it is. You're one of those tall, skinny floor lamps and your head is the shade. From where your brain lights up with all those bright ideas you have, all the way down the "spine" of this lamp, runs the electrical wiring which is your spinal cord.

I used to have a lamp like this and the cord was frayed in a few spots. If you bumped the lamp the light might flicker. It was patched here and there with electrical tape -- much the same way my body has tried to repair itself with the plaques or scars that form on the frayed spots of my spinal cord from the damage of multiple sclerosis.

And just like anything electrical, the lamp operates best when it's in an air conditioned room. Not in sweltering heat.

Raise the body temperature of a person with MS and watch what happens. Whether from an external source or from having a fever, whatever the cause for a rise in body temperature doesn't matter. The result is the same. Known as Uhthoff's Phenomenon or Uhthoff's Syndrome, it is described as the worsening of MS symptoms when the body gets overheated from hot weather, exercise, fever, or saunas and hot tubs.

So this is why, for many of us, barbecues, beach parties, amusement parks, camping trips, and basically anything requiring us to be outdoors in the summer heat feels like the kiss of death. I spent a couple hours outside recently and then had to get in bed and stay there for nearly 48 hours. Granted I watched 2 full seasons of Sons of Anarchy while I was laying there, but I felt wiped out and useless. Betrayed by my body.

For me Uhthoff's means serious fatigue and muscle weakness. I can remember once when I got so hot outdoors at a pool party in the afternoon heat of a Georgia relative's house that I could not get up and walk from the chair I was in to the refuge of the AC of my nearby car let alone in the house. When I had first arrived I had walked as if in total good health, unaided by cane or walker or other assistive device to sit there in the first place.

That was my first experience with a major case of Uhthoff's. I was carried indoors and laid on the couch. As the AC cooled me off, my ability to walk returned. It was quite dramatic and I had absolutely no idea what was happening at the time. Not only that, but I think a lot of the onlookers (who were even more ignorant that I of the peculiarities of MS) suspected I had been faking in order to crash on the couch in the AC for a while.

Ever since my diagnosis in 1999 I have experience Uhthoff's Syndrome in a more mild form whenever I take a shower. I remember the day I got my definite diagnosis and the doctor said "no more hot showers." and I said "for how long?" and he said "forever".

Yeah, right. Like I'm going to sit there and take that piece of advice to heart. Bad enough to be told I have an incurable, degenerative disease you can only (at that time) treat by stabbing yourself with needles. NOBODY was going to come between me and my water heater. I worked it all out though. I'd learned to only take showers at a time of day when I have like an hour to kill laying on my back afterward. I'd only stay in long enough to get my legs almost to the "wiggly" stage, then stop and go lay down until I cooled off and my body returned to it's normal jello like firmness.

These summer days, this time around, are brutal on everyone, but especially those of us with MS. I live in Florida year round so you would think I'd have it rougher than say someone in the northeast. The fact of the matter is, living in Florida I know better than to go outside in the heat of the day, and we have central AC that keeps the house like an igloo. I have learned to adapt.

The folks farther north aren't equipped for blistering, unrelenting heat. They have WINDOW UNITS for AC if they are lucky. How barbaric. Nobody can live like that. So I have great sympathy for those who live where this heat of summer is uncommonly brutal.

Polar Products has a website full of options for keeping cool as well. Their site seems easy to navigate plus they have a page titled "How Do I Choose?" that helps you narrow down the products that would work best to meet your needs.

But I am most excited to share a product I just recently discovered and tested out with amazing results. It's called the Chilly Sport, made by the same folks who make the Chilly Pad and the all new Chilly Dana, and can be found on their website at FroggToggs.com .

This thing is awesome. It's a cloth that feels similar to a chamois, is sort of "waffle" textured on one side and smooth on the other. Very light weight and flexible (when wet -- don't let it dry out or it feel more like cardboard) it comes in a container to preserve the dampness when not in use. You get it wet with water. Doesn't matter if it's hot water, cold water, or something in between. Wet is the operative word here. Then you wring it out real good. It starts working it's magic immediately becoming very chilly as it's name implies. You can wrap it around your neck, roll it up and press it to your forehead, wrap it around a limb, or use it however you like. It works. And if it seems to be warming up, just grab it by both ends, spread taut, and fan it about in the air for a couple seconds. The magic returns. This thing will keep you cool for an hour or two. Maybe longer.

Other ways to stay cool are obvious things. Drink LOTS of water, press ice to your pulse points, take cold showers, stay indoors in the AC, and another one I can attest to from first hand experience -- CUT YOUR HAIR.

Oh my GOSH! I have not had short hair since I was about 6 years old. If it was anywhere close to being up to my shoulders, I called THAT short. Well, I finally did it. I went from long to OMG this is freaky short, and I can't tell you what an unexpected difference it made in the heat regulation of my body.

Alix, me, Amelia and Mark 2005. We all had our hair *issues*.

Alix, me, Amelia and Mark 2012. Much better all the way around!

Don't get me wrong, I've still been hot-flashing - that's not going away any time soon apparently - but for the first time I can ever remember my neck and ears are often cold. Going outside, I can feel the breeze on what has always otherwise been blanketed in a thick layer of bushy human fur.

I can't really get used to the new "look" but it's liberating to have that bubble of fur my head's been trapped in lifted off finally. Besides, being behind the new haircut, I'm not obligated to look directly at it like the rest of my family. Although I often wonder who that is when I pass a mirror.

Trading vanity and big hair for comfort and coolness was the best thing I've done to be proactive about cooling off. Besides, it's ONLY HAIR and it will grow back. (Not soon enough sadly, but eventually, hopefully).

So wherever you are out there, if you are suffering with your MS in the sweltering summer heat of 2012, remember you are not alone. Try to stay somewhere cool, cool off when you overheat, and give your body all the rest it needs once Uhthoff's gets you.

2 comments:

Hey, i just got back from a gilenya event in cherry hill,nj. The patient speaker said she knew you, and we chatted about how good a speaker/blogger you are :) i don't know her name, but she did a good job, too.

Hi Francie, That was Rennie who spoke to you. She contacted me on Facebook and told me she met you. Small world!! You guys who go around talking about me are going to give me a big head. <3 Glad you went to the event. Hope you enjoyed it. Being a speaker has been an honor and an awesome experience I'll treasure always.

Disclaimer

This blog, gilenya.blogspot.com, is not affiliated with Novartis Pharmaceutical Corp. or its branded product, GILENYA (R). The content herein is solely the opinion of the blogger.

Furthermore, I am not a medical professional and the content herein is presented as solely my opinion, and should not be considered as medical advice.

Everyone's experience is different and I am not suggesting that my experience is typical.

Keep an open dialog with your doctor and be sure to discuss any questions you have with him/her. Never act on anything you may have read on the internet -- whether on this blog or elsewhere -- without first discussing it with a qualified healthcare provider.